ICN E-Newsletter – July 2, 2015

1. Barbara Flanigan and Her 30 Year Quest To Discover The Cause of IC

Editors Note – I’ve wanted to share Barbara Flanigan’s story and theory about IC for many years. Barbara was the founder the first Interstitial Cystitis Association here in California in 1983. She has always had one key goal in her volunteer work, to discover the cause of IC. She believes that IC may be related to porphyria due to a hepatic Vitamin B-12 deficiency. For the past thirty years, she has worked with researchers in the IC and porphyria movement to explore this information but conducting the necessary studies has been difficult. As she says at the end of this article, this is her theory. It has not been conclusively proven but it is worthy of our consideration, especially given the role she played in launching the IC movement in the USA. Yes, my friends, she was the first IC activist in the USA. Read the article and learn how you can help here!

2. Men With IC and Pelvic Pain Deserve Our Support

One of the most powerful phone conversations I’ve had with an IC patient occurred about twelve years ago. The phone rang, I answered “IC Network. This is Jill. Can I help you?” All I heard on the other end was deep, heartbreaking sobs from someone so overcome with emotion that they were unable to speak. When the tears finally slowed, I was shocked at his first words. “I am the chief of one of the biggest trauma units in the country. I’ve had bladder pain for five years and not a single of one of my colleagues knows.” When I asked why, he said “Because the minute I tell them, I’ll lose all of my professional credibility.” He then whispered “I can’t do it anymore. I need their help and support.”

Shocked? You should be. His colleagues clearly didn’t believe that interstitial cystitis was a legitimate medical condition and were he to reveal his diagnosis, he feared that he, too, would be minimized and laughed at. But, it also points to a key issue that I want to focus on in this blog, that men are often denied the support and sympathy that they deserve. Read the full article here!

3. IC & Independence Day – Get Out & Celebrate

(For our USA readers) Many interstitial cystitis patients dread holidays, such as Independence Day. The joyful family picnic or nighttime firework display lose their appeal when you’re struggling with a sensitive bladder, need restroom access and would like to eat something that won’t trigger an IC flare. Yes, we have a bladder disorder. Yes, it gives us plenty of discomfort at times. But, yes, we also deserve to be a part of the celebration. Don’t let IC isolate you. You have the right to participate as fully as you would like. I encourage you to enjoy the day!

4. Clinical Trial News

LiRIS Clinical Trials Resume

We’re happy to report that a second round of LiRIS studies has been launched to explore the safety and efficacy of LiRIS in women with IC who have Hunner’s ulcers/lesions. This new study is being conducted by the new owners of LiRIS, Allergan, and is being conducted in Annapolis Maryland and Kitchener, Ontario.. For additional information, please visit: https://www.clinicaltrials.gov/ct2/show/NCT02395042

Men With Bladder or Prostate Pain Sought For Study

Researchers at Northwestern University are seeking men with urologic pain to participate in a study evaluating the treatment efficacy of D-cycloserine(DCS). Men must be 18 years or older, meet the diagnostic criteria for IC or CP, have had pain for a minimum of three months and must be willing to abstain from drinking alcohol during the course of the study. For additional information, please visit: https://www.clinicaltrials.gov/ct2/show/NCT02385266

Seeking Former PTNS & Urgent PC Patients For Paid Interviews

Seeking participants for research study, June 30 – July 6

1.5 hour phone interview

$200 incentive

Sequence is looking for people between the ages of 50 and 80 who meet the following criteria:

Have been diagnosed with Overactive Bladder by a physician

Have completed 12 weeks of PTNS therapy

Returned to their doctor for a follow up which included at least one more PTNS session

Have access to a phone and a computer with internet

If this sounds like you, please respond to the email address below and provide the following information:

Your age, your zip code, when you completed PTNS therapy (date/year), how many sessions of follow up or maintenance PTNS therapy you completed, your contact information. All information gathered will remain private.

5. Hot Conversations in the ICN Support Forum – What patients are talking about!

Four years later, Doing Much Better

ICN member Bbarb shares her story and how, today, she’s not only doing much better but is also in Vet School. Her success story is worth reading especially for newly diagnosed patients who aren’t sure what to do next. Read more!

My VG literally feels sick

ICN member Kelli is struggling with vaginal symptoms.. and has very few bladder symptoms. In fact, she only urinates 4 to 5 times a day. Yet her doctor wants to do bladder instillations. Sounds more like pelvic floor but she’d love to hear from other patients who might have gone through this. Read more here!

Patient Seeks Experience With Elavil As A Treatment

ICN member Ceera is struggling with frequency even after being on Elmiron. She’s considering using Elavil and wants to hear from other patients about their reaction to and response to this therapy. Help her here!

Yasmin, Mirena Causing Bladder Symptoms and Flares

In 2006, we began our first discussion with many patients reporting that Yasmin was triggering IC flares and/or worsening their symptoms. This year, we’re now seeing reports about the Mirena IUD causing problems. Have you had any difficulties with either?? participate in the discussion here!

7. The Latest Research

IC Patients Show Vagal & Heart Rate Changes

Here’s an article that caught my eye. For much of my life, I have had occasional moments when my heart rhythm changes and my physicians have suggested that I had some vagal nerve dysfunction. This research supports that position. Researchers at Case Western, Ohio State and Medical College of Wisconsin presented a fascinating study comparing heart rate and autonomic dysfunction in IC patients, myofascial pelvic pain (MPP) patients and patients with both IC & MPP. They found that IC patients “had diminished vagal activities and a shift towards sympathetic nervous system dominance.” Patients with MPP, however, did not show these changes. This raises important questions that should be answered with additional research. Does this change occur as a result of the IC? Or was it present before the IC began? Read more!

Lidocaine Can Help With Diagnosis of IC

Dr. Richard Henry (Canada) is one of the most important researchers in the IC movement for his groundbreaking work into the use of lidocaine instillations more than 15 years ago. Like other researchers with new ideas, he faced significant opposition when presenting his ideas to the IC research community. He created the foundation for the most popular treatment used for IC around the world. In this latest artical, he makes the case for using lidocaine as a safe and effective diagnostic method. Read more!

8. We’re Looking For MD & PT Recommendations in Canada & USA

If you have a medical care provider who has helped you, please share their names with us! Please visit our clinical database and see if your doctor is listed. If not, please use our recommendation form. We’ll contact each doctor (your name NOT included to protect your privacy), let them know that they’ve received a great review for their patient care, share new IC resources with them and ask if they would like to be listed on our site.

Bring to a soft bowl and cook until thickened. Cool completely. Add to potato mixture. Serve and enjoy.

Notes:

To make Bread and Butter pickle cut one large Bubbie’s pickle and generously add sugar to coat. Put in sealed container and refridgerate overnight or for several hours.

Not everyone can eat Bubbies pickles or other pickles. If you’re not sure you can have them without symptom increase, try the recipe without them! It will still be delicious

Be sure to buy the cream cheese in the block form. The tub cream cheese often has acidic preservatives.

10. What’s New At icnsales.com – 800-928-7496 or 707-433-0413

Purchases in the ICN Shop underwrite the ICN’s Patient Support Forum where more than 40,000 patients gather to ask questions, break their isolation and share their stories with IC!

Gluten Free Quinoa Pasta

If regular wheat pasta makes you bloat up and/or be gassy, we think you’ll love this fabulous quinoa pasta made by American Harvest. Quinoa is growing in popularity around the world for its high protein level and lower carbs. It’s gluten free, gentle on the stomach and bowels AND has a wonderful, almost nutty flavor. Whether you’re making hot macaroni and cheese or a nice, cool pasta salad, this pasta is fabulous! Comes in three varieties: spaghetti, elbow macaroni and rotelli!

Shipping in Extreme Heat

During periods of extreme heat, over 100+ degrees, we will not ship out perishables (i.e. supplements & food perishables) until the weather cools to the low 90’s. We will also only ship perishables Monday through Wednesday to ensure that they are not exposed to heat in a shipping container or mail truck over the weekend. When possible we will use ice packs but please note that they only work for about 24 hours. If you’re ordering any perishables, please call our office if your temperature is expected to become high so that we can delay that shipment or arrange for shipping to an address where your mail is immediately brought indoors rather than allowed to sit in a hot postal box.

OTC Neutraceuticals (Step One IC Interventions)

Essential Reading Materials

New IC Cookbook Released

We are proud to announce that our latest publication, the IC Chef Cookbook, is now available. The book is appropriate for patients struggling with bladder and prostate disorders as well as acid sensitivity. It features more than 260 recipes submitted by IC patients over the past ten years to our on-line cookbook.

Share This Story, Choose Your Platform!

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders.
As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life.
An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions.
With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

Interstitial Cystitis Network

… we have a small favour to ask. More people are reading the IC Network than ever but advertising revenues across health media websites are falling fast. We haven’t put up a paywall – we want to keep our web site and support services as open as we can. The IC Network's independent journalism takes a lot of time, money and hard work to produce. But we do it because we want to help you find relief.

If everyone who reads our reporting, who likes it, helps to support it, our future would be much more secure. For as little as $25, you can support the IC Network – and it only takes a minute. Thank you.

The ICN is a health education company dedicated to IC and chronic pelvic pain syndrome. Rated the top patient website dedicated to IC in peer reviewed studies by Harvard (2011) and the Univ. of London (2013), our goal is to empower, educate and encourage patients and providers!